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Possible Autoimmune Encephalitis

Messages
8
Location
Australia
Sorry, you are going through this now Liv Alice, No I have not heard much since what was mentioned on here I do not know what % either have this or if the test is widely being used or not, I will be mentioning this in London with Neuro Opt on June the 6th.

I also found something recently in my MRI on one slice it appears to be a Tumor in the middle of my Brain I measured 24mm x 18mm in only 2Ddimensions I heard in 3D it will be about 32mm+ I need better scans it is likely a Pilocytic Astrocytoma part tumor/part cyst.

There are Groups on Facebook a few of them under Pineal Gland tumor cysts. A 24mm is 15/16th of one inch very few Neurosurgeons do this surgery...

I am on Facebook as Aidan Walsh in Southampton, the UK if you wanna message me as well there it is the Gold Angel on my timeline logo photo with Angels written on it. I wish you wellness soon xx hugs xx

thankyou for responding :) I'm sorry to hear about your tumor and I hope something can be done for it. And if something can be done then I hope that maybe it helps with some of your symptoms. Cognitive dysfunction is horrible. I have friended you on facebook :)
 

Aidan Walsh

Senior Member
Messages
373
thankyou for responding :) I'm sorry to hear about your tumor and I hope something can be done for it. And if something can be done then I hope that maybe it helps with some of your symptoms. Cognitive dysfunction is horrible. I have friended you on facebook :)
thank you xx hope you find answers & get well soon xx
 
Messages
97
Location
Glasgow, Scotland
Hi Liv, sorry to hear you've been getting these symptoms too after an infection. I hope you manage to get to the bottom of your illness and find some way to get relief from those cognitive difficulties especially. I'd never wish this on anyone.

The seizures and hallucinations are considered hallmarks in textbook cases of autoimmune encephalitis but you can have AE without these symptoms, with declining cognitive abilities just being the main issue. And it's often an exhausting battle with the medical system for patients getting treatment if your case of AE doesn't fit the textbook criteria. Whatever is causing your cognitive issues, I hope you get to the bottom of it ASAP.

I've still had no luck at all getting to the bottom of my issues, I'm just fighting a losing battle it seems. Most recently, I seen a neurologist, apparently an ME/CFS specialist, who re-diagnosed me with "post-viral fatigue" again after a previous neuro wrote it off as FND. I seen another neuropsych not long ago too, expecting to get another cognitive assessment done to help document my decline, but instead, this was refused, I just got gaslighted and told that I had "functional cognitive disorder". I also did video call a US doctor recently who reckons I could have dysautonomia though. And I've been spending the little money I've got doing my own labs and so far, everything seems to be fine besides my vitamin D and iron/ferritin which are worryingly low.

I know a lot of people through playing in bands and stuff, and I'm still determined not to give up playing music because of my illness unless I have no other choice. I've also been using that to my advantage to promote a social media campaign to share my story, get my message across to the medical world and raise awareness of my mystery illness which I refer to now as "Donnington Disease" (after Donington Park where I caught the virus/bacteria).
 

Aidan Walsh

Senior Member
Messages
373
Hi everyone once again. I'm currently waiting on word to see a neuroimmunologist in the hopes of finding answers after battling worsening, disabling brain and head symptoms for 5 years now which I suspect at this point to have neuroimmune causes.

Just now, I continue to deteriorate with this seemingly rare 'degenerative' brain fog I've been experiencing. My head now constantly feels like the equivalent of a joint with severe arthritis whenever I use my brain to think, or even just to feel any kind of emotion. My brain seems to be so heavily inflammed, to the point that it feels inflammed and that something is activily aggrivating my brain and making it worse, completely independent of everything I do or don't do in the hopes of relieving these symptoms. Being so far gone with it and at 27 years old now, I feel that the whole life I once had ahead of me as a young adult has been stolen from me, all because of this one symptom, brain fog. What gives my life any meaning and purpose now is to find a way off of this sinking ship of mental and emotional decline.

After years of research, I'm now suspecting that there could well be autoimmune causes to these brain issues I've been having all along. I've explored many avenues including thyroid disorders (also autoimmune in most cases, causing a similar onset and progression), Lyme disease (I've considered Neuro-Lyme) neurodegenerative diseases resulting from infections and viral-induced intracranial hypertension. But after hearing of mild seronegative cases of autoimmune encephalitis causing an almost identical onset and progression of symptoms, particularly with this unusual manifestation of brain fog I speak of, a case of this could well be what I've been suffering from all this time.

That sudden, abrupt onset of flu-like symptoms with severe brain fog right from the onset, then the brain fog following a steadily worsening course (with mild fluctuations at times) with other worrisome symptoms developing alongside it as it further progresses, with nothing moving the needle on it the entire time, suggests autoimmune causes. I stumbled across "wherearemypillows" blog, which has resonated a lot with me, especially the posts on brain fog, and has given me more reason to suspect autoimmune causes. [The author] also made some very good points on the actual definition of brain fog, and deciding when your brain fog is severe enough to warrant medical attention from doctors (like if it impacts every aspect of your functioning and can't work or live independently because of it like in my case, as opposed to just mild forgetfulness once and a while like losing your car keys).

I'm be seeing a neuroimmunologist very soon, who I'm hopeful can give me further answers on this and finally make some progress towards an actual diagnosis. Until then, I'll keep you all posted, here, on other forums and in the Facebook groups. Anyway, best of luck to everyone on your journeys to better health!
I would look into Pineal Gland Tumor/Cysts there are some Groups on Facebook an MRI with/without Contrast can find this but needs special slices to see this & a CT Scan without contrast will not find this one needs a CT Brain Contrast specifically looking in this area. 3D measurements are best & Addenbrooke Hospital is the only one I know of this who has a Neurosurgeon in this field. FND is another waste basket diagnosis like CBT/GET
 
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